Tuesday, September 28, 2010

Daniel's 2007 Tumor Surgery - Part One

Daniel finished his chemotherapy regimen in early 2005. In 2005, we started noticing that Daniel's growth had slowed down considerably. His younger brother had passed him up in height. We took Daniel to an endocrinologist, a doctor who specializes in hormone disorders. The endocrinologist performed lots of tests on Daniel, but essentially there was nothing that could be done for him. Human growth hormone therapy was not an option, because this therapy potentially promotes tumor growth. Another therapy would have blocked the absorption of estrogen, which strengthens bones. Daniel's bones, because of the steroid use, were already too brittle. We were advised to just wait and hope for the best. In 2005, Daniel's growth was on the 5% curve. Since then, it has dropped down even lower and is not even on the curve. This issue has been a difficult one for us to deal with. We remind ourselves often that God must have plans for Daniel that are different than ours. Bigger. God is preparing Daniel to be a giant on the inside. Daniel's trials have given him spiritual depth and a wisdom and maturity of someone twice his age. We are blessed daily by the amazing character we see in him.

To rewind a little, Daniel had an MRI in mid-December 2007. I've mentioned before that MRI days are never fun, at all. But this day, I felt strangely calm and peaceful. The butterflies were not there like they usually are. The MRI was followed as usual by a consultation with Daniel's oncologist at Doernbecher. We sat in a tiny examination room - Wes, Daniel, and I, for about 45 minutes waiting for the doctor to come in. Our other children had come with us, but were watching a movie in the waiting room. We got so bored, that we started singing songs in that room. I'm sure the whole floor could hear us singing. Finally, the doctor walked in with a neurosurgeon. He proceeded to examine Daniel. His examination was more probing than usual. When he was finished, he looked at the neurosurgeon and said, "Well, he LOOKS okay." He started talking to us about the MRI almost immediately after examining Daniel, but his previous comment had already tipped me off. I knew that something was amiss.

He told us that the MRI revealed tumor growth in the cervical (neck) area. He called the neurosurgeon on the phone before meeting with us, and the neurosurgeon (Dr. Nathan Selden) had decided to come over. They discussed the findings before meeting with us, and had come to a consensus that another surgery was needed to remove this growth. Wes and I took the news in stride, without reacting strongly. We'd been down this road before, and although we were very disappointed, we still had confidence that God would bring Daniel through, once again. This time, Daniel was 12 and not 7 - a big difference. A child's level of understanding is much greater at 12 years old, but Daniel remained incredibly calm.

The first thing we did when we got home was send an email to Dr. George Jallo. Dr. Jallo had assisted Dr. Kothbauer during Daniel's tumor resection surgery in New York and had an equally high level of experience and expertise. Dr. Kothbauer had made the decision a few years earlier to take his neurosurgical expertise to Europe where it was very much needed, and he moved to Switzerland. Dr. Jallo had knowledge of Dr. Selden at Doernbecher. He placed a great deal of confidence in Dr. Selden's ability to perform a successful tumor resection surgery in the spinal cord. Hospitals around the country had made great strides in this field since Daniel's last surgery in 2002 - and so he advised us to have the surgery done in Portland this time.

We followed his advice, and made the decision to go with Dr. Selden. We met with Dr. Selden and he gave us some disconcerting news - each time the spinal cord is opened up, there is an exponentially greater risk for neurological damage, because the surgeon must cut through scar tissue from previous surgeries. This surgery would be less extensive than the one in New York, but at the same time, much more risky. He told us that the chances for paralysis, even death, were higher. We left the appointment feeling desperately aware of how much we needed to release our fears for Daniel's life and well-being, and place them in God's hands. The surgery was scheduled for December 31st, 2007, New Years Eve. So we made the decision to try and have the most wonderful Christmas possible before the big day arrived.

Friday, September 17, 2010

Chemotherapy/God's Protection and Provision

An MRI was performed right after Daniel's shunt placement surgery - his doctors needed answers as to why his hydrocephalus came on so suddenly. Daniel's original tumor began just below the brain stem and spanned all the way to the middle of his back. The portion of the tumor just below the brain stem was very bulky through the neck area and thinned down from there. Dr. Kothbauer removed the tumor to a great extent, but many of the tumor fragments remaining were in the neck (or cervical) area. The MRI performed after the shunt surgery showed that something was going on in that area of the spinal cord. It was difficult for the doctors and radiologist to determine what they were seeing. But the spinal cord in the neck area clearly was quite a bit larger and bulkier as compared to the previous MRI. Although a consensus was never made as to what had caused the hydrocephalus, there WAS a consensus by Daniel's doctors, including Dr. Kothbauer in New York, recommending chemotherapy at this point.

We started meeting regularly with Daniel's oncologist. The chemotherapy regimen recommended for Daniel was one established for slow-growing spinal cord and brain tumors. There were 4 or 5 drugs involved, and the dosages were relatively mild. The hardest part about it was the amount of time involved. It would take at least 15 months to complete the entire regimen, although when all was said and done, it took about 18 months. So we settled into a whole new routine - one involving regular trips to Doernbecher Hospital. During the course of the chemotherapy, Daniel went through a bout of adrenal failure, not related to the chemo directly, but to past steroid use, which caused him to throw up most of his food for about 2 weeks. He also needed sporadic red blood cell and platelet transfusions because of the chemo. However, the chemo drugs made him only mildly nauseous, and his hair didn't fall out. Each MRI performed during this time revealed shrinkage in the cervical area of the spinal cord - we were very thankful.

Daniel and I made almost weekly trips to Doernbecher in Portland. I tried to make each trip a fun experience for Daniel. We ate at his favorite restaurants and made frequent visits to Toys-R-Us. I look back on this time with fondness, and enjoyed all the time I got to spend with Daniel. He was so sweet and patient through it all and a blessing to everyone he came in contact with at the hospital.

One hot, summer day in 2004, I had taken my kids to a swimming area at a local river. On the way home, we stopped at a Dairy Queen drive-thru for some ice cream. In the drive-thru line, I asked Daniel what he would like. He responded, but it sounded like his words were coming out backwards and I could not make out what he was trying to tell me. We got through the line, and I parked the car. I asked Daniel what was wrong. He said, "I can't get my words to come out right." Thinking maybe he had tired himself out swimming, I told him to lay his head back and rest. But about halfway between Dairy Queen and home, I realized something was wrong. He tried talking but his words were making no sense. And he was clearly frightened. I called Wes and told him what was going on and that I was taking him to the Emergency Room.

Daniel came into the ER hardly able to talk, but within about 20 minutes or so, he regained his ability to speak. Later that day, we brought him up to Doernbecher and he was admitted. The doctors there determined that he had had a TIA, or mild stroke. Many tests were performed, including an EKG. Nothing had been lost during the stroke. He was very fortunate. Daniel had no more serious episodes after this. Another very scary event in Daniel's journey - yet he once again made it through without any permanent side-effects or damage. Praise the Lord.

Daniel eventually made it through chemo. It was a long 18 months for the entire family. We continued to home school. By the time Daniel started chemo, I was a pretty experienced and seasoned home school mom. I can not imagine how difficult these 18 months would have been on our family if all my kids had been enrolled in a regular school. Home school gave us tremendous flexibility and also allowed our whole family to focus our energies on taking care of Daniel's needs. Some days, all the kids did their school in the car on the long drives up to the hospital, Sometimes Brooke and Elijah did school at Grandma's house while Daniel did his at the hospital. But in some way or another, school always got done. And we were able to stick together as a family, while many families in that situation would have been forced to "divide and conquer." While our family and our children stayed close and strong, there were relational struggles. Our marriage took the hardest hit, and I will discuss that in a later post. But God is our Redeemer - He is in the business of Redeeming that which is broken and damaged. He preserved our relationship as a family, and He also redeemed our marriage from a deep, dark pit.

Friday, September 10, 2010

The Scariest Day of My Life

It was Sept. 9th, 2003, and Wes, the kids and I went to Pacific City, on the Oregon Coast. There is a huge sand dune on the beach there that our kids love to climb. Once they get to the top, they will run (or roll) all the way down. Daniel, normally able to keep up with his brother and sister, wasn't acting like himself. He seemed tired and said he didn't think he could climb the sand dune. Later, he complained of having a bad headache. Daniel made it through the day OK, but as soon as we got home, he went to bed.

Early the next morning, I heard Daniel moaning in his bedroom, in obvious pain. He said that his head hurt very bad. I talked with him and tried to comfort him. He had to get up to use the bathroom. As soon as he sat up he said he felt sick to his stomach. Within a minute or so, he was throwing up in the bathroom. By this point in our journey with Daniel, I had enough knowledge to be able to figure out what these symptoms most likely pointed to - hydrocephalus. I called Wes's sister, Karen, the "family" nurse. I told her my concerns and asked her if she thought we should take him into the hospital. She said yes. I called Doernbecher and talked with a nurse, who also agreed that he should be seen. Wes was at work, so I called him and he drove back home to be with us. On the ride up to Doernbecher, Daniel seemed to be in less pain. It is common for a person experiencing symptoms of hydrocephalus to feel some relief when sitting in an upright position.

We were told to bring Daniel to the oncology clinic inside the hospital. Once inside the clinic exam room, Daniel just wanted to lie down. I didn't think this was such a good idea. But being that he was very sleepy (another classic hydrocephalus symptom), we let him lie back on several pillows. A doctor came in (not Daniel's regular oncologist). We expressed our concerns. She said a CT scan would reveal whether or not he had hydrocephalus. A nurse came in to draw some blood, and proceeded to ask Daniel some questions. Daniel was awake - he tried to talk, but his words sounded garbled, and we couldn't make sense out of anything he said. The nurse didn't think much of it, but I knew something was very wrong. I looked her right in the eyes and said in a desperate tone of voice, "This is NOT normal. Something is going on!" She sauntered out to get the doctor. Wes and I were left in the room alone with Daniel for what seemed like an eternity. We tried to encourage Daniel to tell us what was going on, but his words weren't at all intelligible. Then right before the doctor came in, Daniel started screaming - it was the scream of intense suffering. Then, he started fading into unconsciousness. The doctor rushed in, and then Daniel completely lost consciousness. The doctor took his vitals. His heart was still beating, he was still breathing, but he just wasn't there anymore. He had sunk into a coma.

Immediately, everyone on the clinic floor mobilized around Daniel. A gurney was brought in. By this time, I was starting to go into a kind of paralyzing shock. I turned away from everything that was going on. I thought for sure Daniel was dying. Fortunately, Wes was there, and he took over. He told the doctors and nurses everything that had happened that day. He stayed with Daniel every second. Wes followed the doctors all the way into a different part of the hospital, holding Daniel's hand the whole way. I remained back in the clinic.. Eventually, Wes came back for me. He said that they were performing an emergency CT scan. Then we heard from the doctors what we had suspected - Daniel had severe hydrocephalus and was being taken into emergency surgery to have a temporary shunt put in.

I don't remember much between when Daniel was rolled out of clinic, until after the surgery was over. But I do clearly remember walking into the ICU. Daniel had a tube coming out of his head. The tube was connected to a plastic bag, which was already almost full of a yellowish liquid, Daniel's cerebral-spinal fluid. The surgeon came in and told us that Daniel's vital signs were good. They did say, however, that there was a chance some brain damage could have occurred - but we wouldn't know for sure until Daniel woke up. Eventually, Daniel started to regain consciousness. Wes's sister, Karen, had arrived at the hospital and was allowed to come into the room with us. The three of us stood hovering over Daniel as he started to wake up. Daniel looked up at us. Karen spoke up and said, "Hey there Daniel, do you know who this is?" Daniel non-chalantly replied, "Oh, Hi, Aunt Karen." We all smiled. Daniel was the same old Daniel. Thank you, Jesus.

Daniel went in for surgery the very next day, September 11th, to have a permanent shunt put in. He has that shunt still. This event kicked off a series of other events, that I will discuss in a later post.

Sunday, September 5, 2010

The Adventure Begins....Again

Daniel's overall health continued to improve after the surgery in New York, and he lead a very normal life considering all he'd gone through. 6 months after his surgery, he had an MRI. The MRI showed that some droplet pieces of tumor in his lower spinal cord appeared to be growing. The growth was minimal - Daniel's oncologist said he thought we should just continue to monitor it closely and wait. In the summer of 2003, Daniel was playing outside, riding bikes with his brother, Elijah. Wes had just come home for lunch, when Daniel walked into the house saying that he felt very weird, his stomach hurt, and he was having trouble walking. Wes and I looked at one another, obviously concerned. We told him to lie down on the couch. A few minutes later we came in to check on him and asked him to try getting up and walking around. He said, "I can't get up." Puzzled, we asked him why. He said, "My legs won't move." We quickly started to realize that something was very wrong. Daniel started to cry and said, "I don't know what's wrong, but I just can't move them, and I can't feel them either." Panic quickly set in.

Immediately, we sprung into action, carried him to the car, and headed for the emergency room at McMinnville Hospital. The ER staff brought him back to a room as quickly as possible. On the way to the hospital Wes called his sister, Karen, to let her know what was going on so she could mobilize the family to pray. It just so happened that Karen was at Doernbecher Hospital on the children's cancer floor visiting a child who was an inpatient there. It was the child's birthday that day and his parents threw a big party for him at the hospital. Karen said, "I need to let Dr. Nicholsen know what's going on ASAP. I will try to track him down."

By the time we arrived at the hospital, Karen had already tracked down Dr. Nicholsen. Dr. Nicholsen called the ER in McMinnville right after we arrived, and said, "Daniel is having a spinal cord stroke. You need to administer dexamethasone (a powerful steroid that immediately shrinks inflammation) STAT!" Within probably ten minutes of our arrival at the hospital, Daniel had been given a dexamethasone injection. The whole time leading up to this, Daniel was still unable to move his legs. But within minutes after receiving the injection, the feeling and movement in his legs started to return. Eventually, Daniel fully regained the ability to move his legs.

We were so struck by the serious nature of the situation and the way God had provided for Daniel's needs. If the medicine had been injected too late, the paralysis in Daniel's legs could have been permanent. Dr. Nicholsen wanted to see Daniel as soon as possible. We drove up to Doernbecher Hospital later that day, and Daniel was checked in as an inpatient. In the room right next to ours was a 12-year-old girl who was recovering from spinal cord tumor surgery - her second one, after it was discovered that her tumor had regrown. Her name was Maddie, and she was doing well. But her first surgery a few years before had not gone so well - it had left her unable to walk. Eventually with physical therapy, she regained some function in her legs and learned how to walk very short distances. Her most recent surgery (in 2003) was more successful - in large part because the neurosurgeons at Doernbecher had been brought up to speed on the advances and new technology involved in spinal cord tumor removal. It was refreshing to meet this family - the first one we'd met whose child had a spinal cord tumor, and very similar in pathology to Daniel's. We were able to share our experiences together. And when we returned home, we kept in close contact with them and and gave each other mutual support.

Daniel was given extremely high doses of the steroid. He had been on steroids before, be never on doses this high. Dr. Nicholsen wanted him to stay on this medication for several weeks. Once a person has been on high doses of steroids for an extended period of time, his/her adrenal glands begin to shut down. So the medication has to been stepped down in very small increments to give the adrenal glands a chance to start working again. In a short period of time, Daniel was so bloated and fat from the steroids, that he looked freakish. His face was so swollen, that it looked like a balloon about to pop at any moment. Everytime we'd go out in public (and we even went on a camping trip in the San Juans Islands later that summer), people could not help but stare at him. We would even hear people say things like, "Oh my gosh, did you see that kid?" It was extremely difficult for me to deal with- especially since under normal circumstances, Daniel was such an adorable kid. Fortunately, Daniel, being only 8 at the time, was mostly oblivious to the very odd way he looked and the way people stared at him. His normal appearance did return about 3 or 4 months later.

The high doses of steroids during this time are the reason why Daniel's growth has been so severely stunted. Powerful steroids drastically affect bone growth in children - the higher the steroid dose, the more that growth will be affected. Even if we had known this, there really was no other choice. As a parent with a sick child, I learned to be thankful for the little things, and to accept the setbacks. After all, this precious little boy who was not supposed live, was still here for us to hug, kiss and treasure.

Just a few months after this, we had another even scarier episode with Daniel that I will share in my next post.

Wednesday, September 1, 2010

To Sue or Not to Sue?

When all was said and done, our insurance covered Daniel's hospital stay in New York (a bill of over $100,000) but only part of the surgeon's costs. The costs not covered totaled about $15,000. Dr. Kothbauer never billed us for what our insurance would not pay - an extremely generous gesture on his part. But over the 8 months prior to our trip to New York, we had accumulated thousands of dollars in medical bills - our insurance covered about 80 to 90% - we were expected to pay the rest, including deductibles. A fund had been set up at a bank here in McMinnville to help us with medical costs. Various anonymous doners contributed several thousand dollars to help defray these costs. How thankful we were for this!

It took only a few weeks upon returning from New York for Wes and I to start grappling with the issues of why things went so wrong at Emanuel Hospital. First, there was the wrong pathology, which led Dr. Wehby to make the decision to take out a portion of Daniel's backbones. This led to a progression of scoliosis that continued from bad to worse. Next the doctors there tried very hard to push us into a treatment regimen for Daniel according to the pathology (that was wrong) - and had we submitted to the recommended treatment, today Daniel would be mildly retarded at best and severely deformed. I praise God that He gave us the wisdom to decline this treatment despite the strong opposition we received from his doctors. Next there was the issue of Daniel's tumor being inoperable, when in fact, there were surgeons (albeit not many) in the US who had been successfully operating on spinal cord tumors for years, even cancerous ones. Why had the doctors at Emanuel not made more of an effort to help us find the help Daniel needed, even when we asked them repeatedly to look into other options?

We consulted a lawyer. The lawyer thought we had more than enough reason to sue, and records from the doctors were subpoened. But during our visits with him, we learned in cases like ours, it's all about damages. How much damage had Daniel sustained, and how did the doctors' mistakes affect the quality of his life? Daniel would have been required t0 testify and so would we. Looking at the big picture, we realized that God had saved and delivered Daniel from so much. Ultimately, we decided not to go forward with a lawsuit, because we did not wish to spend the next several years focusing on the negative. And we didn't want Daniel focusing on all the bad things that had happened to him. Sure we all were injured and wronged, but at the same time, God had protected him in miraculous ways.

In fact, I have often wondered this: If the original pathology had shown his tumor to be slow-growing, then Dr. Wehby would have attempted to remove it. But because the pathology was wrong, she did not. 8 months later, Daniel's tumor was removed by a surgeon that had extensive experience in removing spinal cord tumors, and high-tech monitoring devices to detect changes in nerve function. Daniel made it through an extremely risky, dangerous surgery with only minimal damage. After his surgery in New York, we met a girl who had a spinal cord tumor, and her parents. Her tumor was removed a few years before Daniel's by a surgeon at Doernbecher. She went into the surgery fully able to walk. She came out of surgery and could no longer walk.

Daniel had been so fortunate. Although we decided not to sue, we did file complaints with the hospital and the Oregon medical board. The hardest part for us to deal with had been the trauma of thinking our son had only a few months to live. This took a toll on our health and emotional well-being. But over time, God healed our emotions and our "post-traumatic stress" (I use the term loosely).

We had no idea at this time, just how much more of an adventure we were in for. Daniel did very well for about a year. But his issues eventually resurfaced, and we had many more very scary moments with him. I will continue with his story in later posts.